I just wanted to get something up today that would let many more people know & learn about Dr. Forest Tennant. I want everyone to know what is happening to this good man; this awesome wonderful doctor and friend of mine. I’m working on my own blog post but I wanted this up so that you could learn quickly and start helping. I want you to learn about Dr. Tennant and what he does for people. He helps the sickest of the sick. He helps people that other doctors don’t want to be bothered with; they just want to throw them away! Dr. Tennant is a good man and he doesn’t deserve what is happening to him. What’s happening now, is like what we think might happen in some Third World country!! Our country is changing for the worse! This isn’t the USA I ever remember and loved! What’s happening is fear mongering, craziness, bullying, and who knows what else?

Dr. Jeffrey Fudin, is a very close friend of Dr. Forest Tennant. I asked him if I could re-post this story from his blog today. He gave me permission to do so. I need to make sure you know that I did not write this piece. It is totally all Dr. Fudin’s writing & work here today except for this introduction. Please visit his blog @Paindr.com :

I was shocked to learn of the Gestapo tactics the DEA organized in the attack against Dr. Forest Tennant. What kind of world do we live in? I am not at all surprised however to see the outrage amongst my peers to rise up in support of Dr. Tennant’s well-mannered and careful dedication to his patients. When asked an open-ended question by a prominent professional group regarding this mockery, my first response was, “Perhaps the DEA did the world a favor – this time they screwed with the wrong person and their bungling actions will reverberate pervasively.” I suspect almost every leading pain clinician scholar will line up to offer expert witness services in support of Dr. Tennant should the DEA contemptuous actions against Dr. Tennant ever make it to court.

If anybody Tweets, posts, or shares any comment on social media, please include this hashtag, #DropTheTennantCase.

Dr. Morty Fein was kind enough to provide some backdrop and clever insight to the alternative news associated with the DEA raid on Dr. Tennant and the patients the patients and community that will be harmed as a result.

Here’s what he had to say in his piece entitled,

The Fifth Vital ….Sigh

When there is regime change there is often a purge of anything and everything associated with the prior (often disgraced) movement and its rulers. History gets rewritten and we move on to a new and improved world. In pain politics, the opiophiles have been replaced by the opiophobes in power and every remnant of prior rule, every concept and tenet ends up getting dragged through the mud and discarded. Sigh.

Witness what has happened to the notion of pseudoaddiction. It has been ridiculed without a critical look at its continued importance. Because an executive from a company accused (often correctly but just as often overzealously) of overzealous marketing of opioids wrote an “n of 1 paper” based on a sincere and accurate appraisal of a troubling observation during his early years of pain practice – many years before he left practice and became an executive – the notion has been tied to overpromotion of opioids in the media and by opiophobes. Never mind the fact that the notion is even more important now since the stingy approach to opioid availability is daily leading to even worse pain control for millions and in turn causing desperation. And desperation can lead to people acting in ways that are uncharacteristic of them and their behavior construed as a sign of addiction. Happens every day. Often. Several authors, including the original authors, have over the years written about the need to re-evaluate the concept; not the validity of the observation but in what clinicians need to do to safely respond to it. The answer is not the knee jerk raising of opioid doses that became a bit of a caricature during the early days of the opiophile revolution, but a reappraisal of the totality of the patient’s pain regimen and approach and a sincere respect for the fact that a person taking liberties with their opioids or augmenting with anything including street drugs can indeed trigger a behavioral loss of control that needs to be addressed and not solely relying on improved analgesia to stop the behavior. Loss of control and uncontrolled pain are not mutually exclusive. Regardless of what drives the drug taking behavior and loss of control, abuse and even overdose can result. Perhaps this is why lowering MSEs nationally is not decreasing the number of opioid overdoses and in fact they are increasing them. The notion is self-effacing for us HCPs – that it is our failure to control pain that can drive the desperation and we have the responsibility to help fix it and the behavioral syndrome accompanying it – if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And of course, the pain as the 5th vital sign movement has also been ridiculed as a simple ploy by pharma to lead to more pain assessment solely because it would lead to the more opioid prescribing not to simply bring pain and suffering out of the shadows and raise awareness. Outrageous and laughable contend the opiophobes. That people suffer in silence, that they are afraid to tell their health care providers, that unless they are asked they will often assume that discussion of their pain is not the purview of the providers with whom they are interacting is a trite every day observation doesn’t prevent throwing the baby out with the bathwater. Pain as a 5th vital sign is a movement about communication not treatment. Let us not go back to the bad old days of don’t ask don’t tell about pain and suffering. Want to change the name of it? Fine. But we shouldn’t stop efforts to ask about our patients’ experiences of suffering. We should avoid knee jerk reactions driving what we are going to do about it. Simply because someone reports their pain as “8 out of 10” doesn’t mean we should knee jerk raise their opioid dose nor should we knee jerk increase the frequency of their meditation sessions. It requires time and thought and a self-effacing attitude that we can do better for the person and a commitment to do better for the person. If anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

And while we are on the subject of regime change, some of the most expert, most ethical and most erudite former leaders in the opioid movement are being dragged through the mud and the legal system on virtually a daily basis nationwide, tormented by district attorneys and ambulance chasers who would beg any one of them to care for them or their family members if they were stricken with severe and unrelenting chronic pain. Virtually everything they ever wrote, said or did being misportayed and misrepresented as they get held responsible for consequences of treatments that occurred in jurisdictions they never set foot in. As if writing or talking or doing everything they could for opioid safety was just a ploy for pharma to push more drugs. No, it was a move to try to help others if they were going to do opioid therapy to adopt a seriousness and responsibility and acquire expertise like their own. They may have overestimated the integrity of their peers that went on to run pill mills but they never advocated for pill mills. They may have underestimated the size of the gap between their own expertise and that of their brethren that would try to emulate them. But they never advocated for carelessness or lack of responsibility. They wanted us all to take a self-effacing (i.e. that we all need to learn more about pain) and responsible and thoughtful approach. As if anyone has the time and reimbursement anymore in our healthcare system for this much soul-searching and critical thought. Sigh.

This brings me to the raiding of the home and practice of the beloved and venerated Dr. Forest Tennant. His Thanksgiving gift was a storm trooper’s boot in his door – by a cop who has a better sense of what the doctor’s patients need than the doctor (with 50 years plus of experience) does. And who I am certain would beg Dr. Tennant to care for him and his family if they were stricken with unrelenting chronic pain. Dr. Tennant called them and their scare tactics out in an interview right after the events and he intends to fight. Be Brave! Don’t run Forest, don’t run!

Free the Opioid 5 I say.

It is time to stand and fight. Regime change and the re-writing of history must stop now. Our support for these 5 is vital. Sigh.

Here’s some information about Dr Fudin. This information was taken directly from his own website/Blog , also at paindr.com…. I didn’t want to get anything wrong and so this too, is directly copied from his Blog. All rights are reserved by him and everything here today is all his work and his writing and not mine! Please read about Dr Fudin:

Adjunct Associate Professor, Western New England University College of Pharmacy

Adjunct Assistant Professor of Pharmacy Practice, University of Connecticut School of Pharmacy

Section Editor, Pain Medicine

Dr. Fudin graduated from Albany College of Pharmacy & Health Sciences with his Bachelors Degree and Pharm.D. He completed an Oncology/Hematology fellowship at SUNY/Upstate Medical Center. He is a Diplomate to the American Academy of Pain Management and a Fellow of both the American College of Clinical Pharmacy and the American Society of Health-system Pharmacists.

Dr. Fudin is a Section Editor for Pain Medicine, Founder/Chairman of Professionals for Rational Opioid Monitoring & Pharmacotherapy, and peer reviewer for several professional journals. He has participated in developing practice guidelines for use of opioids in chronic noncancer pain (APS, AAPM collaborative) and participated in national and international guideline development for arthritis, fibromyalgia, and palliative Care. He has also participated in the development and co-author guidelines for the treatment of opioid-induced constipation. He is consultant to a national panel to develop consensus guidelines for the proper use of urine testing in addiction medicine, a collaborative effort with the National Association of Addiction Treatment Providers (NAATP), Center for Lawful Access and Abuse Deterrence (CLAAD), and the American Society of Addiction Medicine (ASAM). And he is a panel member for new urine test guidelines under development by the American Academy of Pain Medicine.

Dr. Fudin is President and Director for Scientific and Clinical Affairs for REMITIGATE, LLC, a software development company specializing in opioid safety. He practices as a Clinical Pharmacy Specialist and Director, PGY-2 Pharmacy Pain Residency Programs at the Stratton Veterans Administration Medical Center in Albany NY. He holds adjunct faculty positions at University of Connecticut School of Pharmacy, Western New England University College of Pharmacy in Springfield MA, and Albany College of Pharmacy & Health Sciences. Dr. Fudin has been an invited speaker on pain management nationally and internationally.

Dr. Fudin is founder and Chair of Professionals for Rational Opioid Monitoring and Pharmacotherapy (PROMPT), owner and managing editor for paindr.com and founder of Remitigate LLC, a software development company that has launched an application to help clinicians interpret urine drugs screens with several pipeline products including a pharmacogenetic applications and other opioid safety software initiatives. He is a prolific lecturer, writer, and researcher on pain management topics and he served as a Task Force member for the Board of Pharmacy Specialties (BPS) for role delineation study/practice analysis of pain and palliative care pharmacy. He was awarded the American Academy of Pain Medicine’s Presidential Commendation in 2014, in recognition as “a voice for scientific integrity and an advocate for people in pain.”

This was written by Dr Mark Ibsen, MD, who has become a close friend of mine; as has Dr Tennant. My thoughts and blog post on this subject will be forthcoming ASAP! But for now, just for this moment, here are Dr Ibsen, MD’s words regarding this abhorrent situation with Dr Forrest Tennant:

Dr Tennant recently came to Montana to testify for Dr Christensen. Sadly, while in the home state of many of his intractable pain refugee patients,

His home was invaded and business ransacked by agents who allege he was “overprescribing”.

Just what IS overprescribing?

And what would Underprescribing look like?

This term would imply that there is a ceiling dose of a medication that has been prescribed.

It would also imply that there is a “Goldilocks Dose” that is not too high

Not too low, but “just right”.

Dr Tennant,

An endocrinologist,

Has been on the forefront of research and therapy for the intractable pain that patients developed after years of medical or interventional management, or mismanagement.

These are patients with adhesive arachnoiditis, complex regional pain syndrome, trigeminal neuralgia, failed back syndrome, traumatic brain injury, and various other accidental and iatrogenic pain syndromes.

The law enforcement and regulatory agencies Who are threatened by the Obi-Wan Kenobi of pain medicine do not have the sophistication,

compassion,

Or training to realize that they are not dealing with El Chapo. Drug dealers don’t actually care how their clients are doing. In fact, when a drug addict dies of an overdose, sales most often go up. Dealing drugs that are unregulated and often fatal is not what doctors do.

Most people who suffer cardiac arrest have some type of medication on board. We don’t arrest their doctor for prescribing a Statin or aspirin or blood pressure medication in an attempt to enhance or prolong a persons life.

People have hypoglycemic reactions every day,treated for their diabetes. We do not arrest their doctor for “overprescribing insulin”.

All doctors are required by their oath to do no harm-to try to hit that “Goldilocks dose”

When cancer patients die,

Do we blame there oncologist for killing them?

There’s a reason medical doctors train for 12 to 20 years, then continue to study and research the literature their entire careers. Could it really be true that Dr. Tennant is sidelined by a DEA agent with 12 weeks of training?

Are doctors no longer protected by the regulations outlined in the Controlled Substances Act?

Dr. Tennant treats the sickest of intractable pain patients. I too have referred intractable pain patients to him, I have taken his courses and follow his protocols.

Now, who will testify for me and protect my patients?

According to the World Health Organization North America provides the best pain care management on the planet. Dr. Tennant has always recommended following the world health organization pain ladder.

Doctors like forest Tennant, William Hurwitz MD, Ronald Myers, and Chris Christiansen are simply guilty of trying to relieve the suffering of their intractable pain patients.

This often requires us to

“Increase the dose”

If we as a culture continue to punish pain patients and the doctors that serve them no one will be safe accessing the incredible medical system we have developed in the US.

Yes, complications occur.

Yes, people are dying.

From heroin/ fentanyl injection ODs,

Not

From responsible informed and well researched treatment of those in intractable pain who have failed every other therapy available.

I know in my heart, that some of what I had originally written in my first “PAIN WARS” article (9/19/2017 see it in its almost original form below—I did still change a few small details. But for the most part, the original article is below ) in the National Pain Report), are Kolodny’s true “opinions”. We all are aware of those; because he’s proven his opinions over and over again to all of us. But I made a mistake and there were two issues to which I could not find an exact citation. I rewrote the article with citations down to the details. This time there was no reaction; no response from him? The fact that he thinks Intractable and/or chronic pain patients should be able to be OK with Tylenol or Ibuprofen is just laughable. It reads on the bottle of Tylenol “for minor aches and pains”. Obviously Andrew Kolodny, the shrink/Psychiatrist; has not ever lived with chronic intractable pain. What’s interesting is that he doesn’t treat Chronic pain either!
IF he is not educated in the treatment of chronic paian, then how is it that he is able to dictate what happens to the chronic pain patients?

What I find also odd, in a way, its that he thought what I wrote in the original article was “unfair”? What about what he’s doing to a large number of chronic pain patients? I want to scream that it is UNFAIR that he is responsible for the rise in suicides due to the immediate drop or quick tapering of our pain communities medications that are & have been used as directed and in a responsible manner. He has our communities deaths from suicide on his conscience and on his hands. He is lying to the people, tugging at unknowing, good peoples heartstrings, so to speak. By telling them that these medicines are killing people and they are dangerous etc.; he is getting many of these people to side with him! They are only “dangerous” if misused or taken improperly, just like anything else! Water is dangerous and you can die if you drink too much!
The Dictionary’s definition of “enemy” is = a person who is actively opposed or hostile to someone or something. Also it states that “enemy” is a thing that harms or weakens something else. Well, Andrew Kolodny M.D., may harm us and we may die due to suicide or increase BP and HR from higher pain levels; because of his opinions. This is on his conscience as well. But he will never weaken the strength of compassion and endurance in the chronic pain community of the USA.
What I don’t understand is why can’t the government officials see through him?
Why don’t they see him trying to have “saving the addicts” (certainly not saving the chronic pain patients) as being his claim to “fame”? Why can’t anyone else see that he owns treatments centers with a “revolving door” policy and he makes a ton of money off these poor people?

He tries to tug at the heartstrings of those who have lost loved ones to addiction. Chronic pain management and addiction management are two different areas. Those who have lost someone to an overdose want all Opioids gone now; because someone that they love has passed away due to addiction and /or the misuse of opioids. That’s horrible, terrible and unimaginable to say the least. But Well, now we, the chronic pain community are losing people daily; due to the quick tapering and abrupt ending of opioid treatment to chronic pain patients. Chronic pain can kill as stated in the National pain report article from June 20, 2017. The terrible true fact is that Opioids don’t kill people any more than guns kill people? If you misuse either of them, you can die. If you don’t follow the instructions of a legitimate pain management physician, then you have a higher chance of dying from overdose. People can overdose on insulin that they have in their home for Diabetes. Just as someone on High blood pressure meds, anti-depressants and other medications can overdose if they misuse their medications. We are not children and if we are responsible adults who are doing well on opioid therapy and do not get high, do not ask for more, are not groggy or foggy from the medications, and we don’t take more or less than prescribed; then we should have a right to live our lives in as little pain as possible! Nobody should be forced into having risky and/or expensive surgeries either.

Whatever works for each specific person, is what should be done to allow that person live the best life that they possibly can. If medical marijuana is legal for you and it works, then you should be allowed to make that choice. If acupuncture, yoga or meditation relieves your pain, then so be it. Everyone should leave you to do whatever works for you. But for me, with my complicated medical history, Long QT syndrome and more; the opioids have no side effects and they are still working, without raised doseages.

They need to totally get rid of the CDC guidelines and start over from the beginning. They need to do so with educated pain management physicians and not PROP and /or treatment center owners who stand to make money from the drop in pain medications. This entire conversation has the pain community afraid, panicked and in more pain because of their fear of living in pain or dying because they cannot live with it.
It seems to me that Andrew Kolodny will not respond to the National Pain Report because he knows that Ed Coghlan is an upstanding publisher. He doesn’t allow people to use propaganda or say things that cannot be proven. That Health News magazine has a great reputation and that is because many peoples voices are allowed to be heard. Andrew Kolodny was offered the chance to have his voice heard. He wont respond because in the pain community, he is the “enemy” and not the “star”.

These are my own private views.

Pain Wars – Uncensored

(*This article was posted originally and then removed because I made a mistake. I failed to post 2 citations. I rewrote it, changed it a bit. I added some information and subtracted a few items. The end result was posted on National Pain Report on September 20, 2017)

There’s a lot going on with regards to chronic pain during the month of September. There are events and fundraisers in the name of raising awareness for persons living with chronic pain illnesses. These are good things and they help dismiss the myth of the chronic pain patients. We are not addicts; we aren’t complainers or whiners. We are real people living with chronic pain and high pain illnesses 24/7/365. The majority of the chronic pain population sees a pain specialist, a Dr. who helps with pain, or we visit a pain clinic and do whatever it is that is requested. Whether it be to urinate in a cup, give blood or jump through any and all of the other hoops asked of us, we just do it. The end result is to relieve our pain.
But our day to day life, as hard and complicated as it can be, is becoming more difficult. This doesn’t help with things such as depression and/or anxiety; which often go hand in hand with chronic pain, especially in these uncertain times. There are things that are happening around us that we feel no control over. Our feelings are correct. I read an article the other day that pretty much says, Andrew Kolodny, a PROP (Physicians for responsible Opioid prescribing) physician and Dr. Jane C. Bellantyne, the president of PROP; both feel that we all need to just, in other words; “deal with it”. Bellantyne says that “patients should pursue coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.” They both have said that “patients should not focus on reducing the intensity of their pain, but their emotional reactions to it”. I’m feeling that maybe the two of them need to take a “pain challenge” and be part of an experiment where they somehow feel the pain that many of us feel and they don’t know the time frame for how long they will feel that way? I’m not sure they would feel the same way afterwards, are you?

Andrew Kolodny is a proponent of a law that can detain pain patients against their will. According to the National Alliance for Model State Drug Laws, 37 states already have statutes that allow substance abusers who have not committed a crime to be briefly detained against their will. Often they must find that the person being committed is a harm to themselves or others. Well, that is “substance abusers”, but Kolodny wants to increase that statute to include chronic pain patients deemed to be taking “too many” Opioids. But to Kolodny and others, this can be subjective, what is “too much”? Are we still living in America? If this is the case, then why aren’t we putting people away for having heart disease then, if they continue to smoke? We don’t institutionalize persons who are diabetic and who don’t manage their diets well? (Yes, I’m being facetious here but just to make a point).

Kolodny and his minions feel that pain patients and drug addicts are not two distinct groups. He says “the opioid crisis is about addiction, and the reason that overdose deaths are at historically high levels and the death rate for middle-aged white Americans is going up, is due in large part to the epidemic of opioid addiction with overdose deaths occurring most commonly in people with legitimate prescriptions.” Do we have a buzzer or a gong here? May I push it? Andrew Kolodny you are wrong! The problem is actually illicit, NOT MEDICAL, drug use. A Cochrane review of opioid prescribing for chronic pain found that less than one percent of those who were well-screened for drug problems developed new addictions during pain care. A more recent review put the rate of addiction among people taking opioids for chronic pain at 8-12 percent. What this truly means to us is that all of these limits on Opioid prescribing for chronic pain patients puts us, the pain patients, at great risk of harm. But guess what? It is not going to do much to stop addiction!

We, the chronic pain community not only have to live with physical agony but with this “Opioid Crisis”. The the true crisis is that the chronic pain community is losing access to reduction of their pain. This is affecting the patients work, if they in fact are still able to work. It is also affecting our families, relationships and at its worst, our sanity! The American Academy of Pain Medicine says that there is a “civil war” going on in the pain community. Their president, Dr. Daniel B. Carr, says that “One group believes the primary goal of pain treatment is curtailing opioid prescribing. The other group looks at the disability, the human suffering, the expense of chronic pain”. Our Pain specialists are saying that nothing can be done? We must continue to stand up and keep fighting for what we need. Andrew Kolodny says that in the end, chronic pain patients need more and more opioid medications in order to curtail the pain. But there are an abundance of pain patients who never increase their dosage of opioid medications throughout many years. They are are still getting pain relief. Stanford University’s Dr Mackey said that there are some risks for some people but that “nearly 15,000 people die each year from anti-inflammatory medications like Ipbuprofen. But people aren’t talking about that?” He also feels that “there needs to be a thoughtful balanced approach”. He said “Opioids are a tool-they’re more often a fourth or fifth line option.”

What’s happening right now with this crisis is that pain patients are having their medications taken away “cold turkey” or reduced greatly; thus causing them great pain and torture. All of this just proves how the PROP Dr.’s and others, are taking the CDC guidelines to the extreme and hurting and demeaning innocent people who already have to live with sometimes several chronic high pain conditions. What I find interesting from my own research is that many of these PROP Dr’s like Kolodny and Ballentyne,, have a lack of empathy and also have a stake in making money off of chronic pain patients; in that they own drug treatment facilities. We’ve got the medical wars on one side and then the government people stepping in, who have no idea what they’re doing. All that they know is that “drugs are bad”.

This was my comment in response to the article that was in the national pain report on October 3, 2017. The article was written by Ed Coghlan, the publisher of the health news magazine the “National Pain Report”. I thought that this was important for people to see! Here’s the link to the exact article in which Andrew Kolodny was offered to write something in Response to my article the “Pain Wars”, that he did not like & thought was “unfair“. Here’s my comment:

“What Ed is saying is spot on exact! I know in my heart, that some of what I had originally written are Kolodny’s “opinions”, we all are aware of those; because he’s proven his opinions over and over again to all of us. But it’s true, there were two issues to which I could not find an exact citation. I rewrote the article with citations down to the details. This time there was no reaction from him? The fact that he thinks Intractable and/or chronic pain patients should be able to be ok with Tylenol or Ibuprofen is just laughable. It reads on the bottle of Tylenol “for minor aches and pains”. Obviously Andrew Kolodny, Psychiatrist; has not ever lived with chronic intractable pain. What’s interesting is that he doesn’t treat Chronic pain either!How is he able to dictate what happens to the chronic pain patients?

What I find also odd, in a way, is that he thought what I wrote was “unfair”? What about what he’s doing to a large number of chronic pain patients? I want to scream that it is UNFAIR that he is responsible for the rise in suicides due to the immediate drop or quick tapering of our pain communities medications that are & have/had been used as directed and reasonably. He has our communities deaths from suicide on his conscience, on his hands. He is lying to the people, tugging at unknowing, good peoples heartstrings, so to speak. By telling them that these medicines are killing people and they are dangerous etc.; he is getting many of these people side with him! They are only “dangerous” if misused or taken improperly, just like anything else! Water is dangerous and you can die if you drink too much!

The Dictionary’s definition of “enemy” is = a person who is actively opposed or hostile to someone or something. Also it states that “enemy” is a thing that harms or weakens something else. Well, Andrew Kolodny M.D., may harm us and we may die due to suicide or increase BP and HR from higher pain levels; because of his opinions. This is on his conscience as well. But he will never weaken the strength of compassion and endurance in the chronic pain community of the USA.

What I don’t understand is why can’t the government officials see through him?

Why don’t they see him trying to have “saving the addicts” (certainly not saving the chronic pain patients) as being his claim to “fame”? Why can’t anyone else see that he owns treatments centers with a “revolving door” policy and he makes a ton of money off these poor people? He tries to tug at the heartstrings of those who have lost loved ones to addiction. Chronic pain management and addiction management are two different areas. Those who have lost someone want all Opioids gone now, because someone that they love has passed away due to addiction and /or the misuse of opioids. That’s horrible and terrible and unimaginable to say the least. But Well, now we, the chronic pain community are losing people daily; due to the quick tapering and abrupt ending of opioid treatment to chronic pain patients. Chronic pain can kill as stated in the National pain report article from June 20, 2017. The terrible true fact is that Opioids don’t kill people any more than guns kill people? If you misuse either of them, you can die. If you don’t follow the instructions of a legitimate pain management physician; (*who went to school for many years longer than Andrew Kolodny, to learn specifically about how to manage chronic pain), then you have a higher chance of dying from overdose. One can overdose on insulin that they have in their home for Diabetes. Just as someone on High blood pressure meds, anti-depressants and other medications can overdose if they misuse their medications. We are not children and if we are responsible adults who are doing well on opioid therapy and do not get high, do not ask for more, are not groggy or foggy from the medications, and we don’t take more or less than prescribed; then we should have a right to live our lives in as little pain as possible!

They need to totally get rid of the CDC guidelines start over from the beginning. They need to do so with educated pain management physicians and not PROP and /or treatment center owners who stand to make money from the drop in pain medications. This entire conversation has the pain community afraid, panicked and in more pain because of their fear of living in pain or dying because they cannot live with it.

It seems to me that Andrew Kolodny will not write in this blog because he knows that Ed Coghlan is an upstanding publisher. He doesn’t allow people to use propaganda or say things that cannot be proven. This Health News magazine has a great reputation and that is because many peoples voices are allowed to be heard. Ed offered Andrew Kolodny to have his voice heard here, in this venue. But that won’t happen because here, he is the “enemy” and not the “star”. These are only my own private views.”

I am writing today about a topic that I had hoped to never write about. But it has come to my attention and the attention of several support group leaders on Facebook; that there are imposters trying to infiltrate our support groups. This is a sad story and one that should never happen. Anyone who runs a support group for any illnesses, including and especially the chronic pain illnesses, needs to be aware of this situation.

I opened up Facebook a week or so ago, only to feel relieved in a way, that none of my support groups were affected by this “fake” person who pretended to have RSD/CRPS. This intruder into the CRPS community had befriended over 600 people on Facebook in over a period of just about 3 years. She started her own support group and then the worst happened. She gained the trust of many people who are suffering with the horrible chronic nerve pain of CRPS. She pretended to have the disease and pretended to have “cured herself”. This is unforgivable and preposterous to say the least. I had no idea about any of this until last week when all of the news broke. Her account was found out about and she disappeared.

She disappeared but not before taking with her dozens of trusted CRPS patients photos and videos. She asked them to make videos and send them to her and photos as well. She wanted these videos to be showing how they “worked through their pain and pushed through it”. She told several people in her support group that on the delicate and sensitive flaring areas of Skin that has been diagnosed with CRPS/RSD; they should rub sandpaper! She wanted photos and videos of them doing this. Also, just to inform you that this practice is horribly wrong and could cause terrible pain, progression of illness and even worse, infections. She told a person to “pull on their RSD/CRPS riddled fingers until the pain was excruciating” and told them that this would “help them cure their RSD/CRPS”.

This “fake” was a well known figure in the RSD/CRPS community for these past few years. She had some telltale signs that I notice right away and thus the reason I vet my support groups very carefully. She had no real photos on her Facebook page and no family pictures or friends. Nothing “personal” stood out, from what I hear, on her page. She never showed herself in a video or a Facebook chat or video either. If anyone has ever watched the Television show called “Catfish”, that is one of the biggest clues to being a “fake” or a “Catfish” account. When you befriend someone on Facebook please be sure to check out their profile. Also, it doesn’t matter if they are friends with some of your friends, it can still be fake. Look for the signs of “realness” and of being a true person online. Look for achievements, and milestones, family and other photos (as I stated above) and don’t befriend anyone that you don’t feel comfortable with.

Please understand that most of the support groups are wonderful on Facebook. They are run by loving and caring patients living in pain also. Feel free to check out the group admins. pages also. Look them up and see who they are and if they are shown as having a true Facebook account as well. Feel free to ask questions before you join a group, to see what the person believes about your illness(es). Check to see if you believe in the same ideas, or not? The people living in the pain community have seemed to me to be so caring and always wanting to help a fellow sufferer. I think this is where the story gets so dark, because this “fake” person tried to gain the trust of people who are kind and caring and suffering. We are all trying to make sense of these illnesses and the pain that they bring, how could anyone “pretend” to have something and then hurt people who’s trust they’d been given freely?

These are questions that I cannot answer nor fathom. This “fake” person was finally exposed and the authorities were called. There’s not much else anyone can do because she/he or they, closed down their Facebook account, their support group and took all of the photos and videos with them. Wherever they’ve run off too, we will never know. We don’t know if that person will show up again and now people will be afraid and looking around every corner for someone like this; wondering who to trust now? But if you are requested to do anything that you don’t feel comfortable doing, don’t do it. Unless you know someone online and have done a face chat video with them, or met them “in person”; don’t give away anything personal in the form of information, videos or photos. But please don’t give up on the support groups because there are many that are loving, kind and very helpful. I am so thankful that this person did not make it into my support groups. I remember the name and remember “her” asking to be in my groups and I felt hat something wasn’t quite right. I declined her entry into my groups. I declined her friend request. I am just lucky in that respect, because many of my dear friends who are very careful; were still affected by this imposter into our RSD/CRPS community.

I’m concerned for the people who were hurt in my communities. This person was relentless in her “pushing” people to do things that were painful in order to give them false hope of a “cure”. She said that she herself had been cured and that all of the things she told them to do, she had done and this is how she got well. We all want hope and so these people were desperate for some kind of relief. With our pain medications being taken away weekly and more people being denied appropriate pain relief; I can see how this can happen. But just be very careful and don’t give up on the support groups but be selective in your choices.

The CRPS communities are left now with a bigger wound to heal. They feel vulnerable and duped. People are trying to wrap their heads around the idea that their photos and videos are out there somewhere and they don’t know where? Please know that if you were a part of this scam, it is not your fault. The imposter was very “good” at what she was trying to achieve. She was sly and deceitful in her endeavors to trick a community of pain sufferers. Please be assured that the Police have been alerted and Facebook security also has been told about this. There is not a lot that they can do except to try and make sure this doesn’t happen again. We all have to be a part of that! We all have to keep our eyes and ears open without getting too paranoid or hurting more people in the process. Don’t accuse anyone if you are not sure, because that’s happened to some RSD/CRPS patients as well. That has got to be a horrible feeling and it appeared that the people who were wrongly accused have regressed and so we have to be so careful not to be one way or another. Just be on your guard but not overly suspicious of everyone due to this situation.

Here is a link to another article written by someone else regarding this subject: http://www.blbchronicpain.co.uk/news/facebook-crps-faker-pretend/

Having Chronic Pain is unlike the pain following a surgery or even the pain after an injury. Many things about Chronic pain are not seen with our eyes. There are so many “invisible diseases” that involve living with exhaustion, illness and pain. Many people think they know about these issues. If they’ve not witnessed life with a chronic pain patient, then they truly cannot understand or know what we live with on a daily basis. People are misinformed and sometimes quick to judge persons living with pain day after day. Some think we are lazy, anti-social or just rude. We cancel appointments, shopping trips and dinner dates with our friends and family. But we are not any of the above. We are people who have hopes, dreams and inspirations; just as anyone else. The issue is that our futures don’t include many of those same things after we become chronic pain patients. We must grieve our losses and find new hopes and dreams. This is the price that we pay for living with chronic pain 24/7/365.

I am still “me” underneath the chronic fatigue and pain. I still want to talk with you and hear about your day, family and dreams. In between the days of staying in my PJ’s and lying in my bed or on the sofa, I try hard to be a part of your “normal” world. Some days I may even look “normal” to you. In fact, most of the time, I probably appear to be “just like everybody else. I try to wear nice pants, cute dresses and sometimes I put on make up, just like you do! If you visit my Social Media photo feeds, you’ll see someone who “looks normal”, holding onto her grandchildren’s hands, smiling and actually joyful underneath the pain somewhere. Sometimes even sitting on the floor with them. You may read about me “babysitting” for our grandchildren; or going out to dinner with our friends. You may even want to “judge” me by saying to yourself “How can she be that sick or in that much pain, if she’s doing all of these things?” If you think like that, I can’t blame you because I once thought those same misinformed thoughts. What you don’t see, is how I get to the floor or how long I am actually down there. You don’t see my husband helping me (and doing most of the work) to get me up and off of the floor. You don’t actually know how long I am down there or how many pillows may be behind my back. You also don’t know that I most likely stayed home in my pajama’s all day until 4:00 pm when we had dinner plans at 5:15 pm. You also aren’t privy to the information of how long I might’ve stayed at dinner and “if” I was able to even eat anything that night. Not only do I have several chronic pain illnesses, but many of them are invisible to you. They are very much visible to me. I can “see” them with each new line on my face and each new grey hair that gets covered up each month. I can’t only “see” the pain, but I feel it with every part of my being. It doesn’t go away, not ever. Though some days are better or worse than others; the chronic pain of “Invisible Disabilities” and “Invisible Illness” is apparent to me every minute of every day. Often I fight with myself about going to sleep at night. Do I try to go to bed at a more normal time and maybe get 4 -5 hours rest? Or do I stay up until I drop; then fall asleep quickly and wake up in just 2 or 3 hours? If I sleep more than 2 or 3 hours, I will awaken and cry. Whether it be inner tears or outward ones, I will cry from feeling as though someone set my body on fire due to the CRPS. I will have tears from feeling like my neck and back are broken from the Degenerative Disc disease, Spondylosis, Scoliosis and/or multiple herniated/bulging discs in both my cervical and lumbar spine; not to mention the Chiari malformation I in my neck. Yes, if I move or get up before I’m ready, I definitely will cry. It’ a routine that we have, you know? My husband gets up at 6:00 am every day to give me my medicine; just so that I will be able to get up with him a couple of hours after that. He is my hero.

You cannot feel Gastroparesis, but if I eat one wrong food at dinner time; I will be up all night and very sick. My husband, who is also my soul-mate and my caregiver; knows all too well about these long nights. I have worries, though he continues to tell me that they are unfounded; that he will get tired of all of this one day. It’s not much fun to be with someone who is constantly complaining about pain, so I try to keep it to a minimum. But even to him, my pain is not invisible. He knows the grimace of CRPS and the fidgeting of the intensifying pain on an outing. He knows that when I start rocking back and forth, it’s his cue to step in and say “time to go home”. I know that my own family gets frustrated with me because I’m not able to babysit “alone” or have kids dropped off on the spur of the moment. I cannot commit to babysitting for the little ones under school age for a week. I’m not able to help take the load off of my children and their spouses, so that they can go on a trip. There are many things that I cannot do but there’s so much that I still have to give.

Please don’t judge what you do not understand. If you think you know, then go and read some more about chronic illnesses and pain. Spend time with someone like me and see how impaired the activities of daily living have become. I’m probably not always much fun to hang out with, but I’m still “me” inside. Digging through the pain and exhaustion, there’s a real person inside, who still has a heart and feelings that can be hurt. Feelings that are probably more fragile than most because of the judgements, stares and hurtful words that come from some people who are misjudging and misinformed. I’ve had nasty notes put on my windshield, that would make anyone cry. One note said this “How dare you take this HC parking space! It must be a “mental thing”! I hope you become handicapped for the rest of your life, so you know how it feels to have someone take your parking spot”! Yes, indeed; that was the note left on my car at a little market right across the street from my house. I had my cane in the grocery cart and the little blue HC parking permit on my rear view mirror. But I was still judged and torn to shreds because of the way I look.

Please know the difference between being able to stand for 20 minutes and being able to stand all day. The difference between having the flu and feeling that same way for many many years! Try and understand that what I might be able to do today, I probably won’t be able to do tomorrow. Don’t say “Oh you look happy and healthy” or tell me that I’m looking or sounding “better”. I’m just trying to cope with the life that I have been dealt. Please don’t judge me if I try to do awareness events or fundraisers for the causes of my illnesses and those of my friends. Though I may “do” these things; I definitely know that I will “pay” for it later. I will rest for days in between and sometimes weeks. But I deserve to do things and to try and be happy; even if it is in between the pain at its worst and best. Please know that getting out and doing things doesn’t make me feel better, it actually makes me feel worse for days at a time.

Chronic pain is hard for you to understand. It wreaks havoc on the body and the mind.
It is exhausting and exasperating. I’m doing my best to cope and live my life to the best of my ability. I ask you to bear with me, and accept me as I am.

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You will find more "about me" here: About.me/Suzydukettes. I am a survivor first! I am a Chronic Pain Patient who lives with Severe Systemic-Full Body RSD/CRPS, the highest form of chronic pain known; at #43 on McGill Pain Scale. I live with RSD/CRPS and several other high pain illnesses. I continue to be a mentor for newly DX RSD/CRPS patients. I'm a blogger and Author/regular columnist for "National Pain Report". I'm a Patient Leader for WEGO Health as well as being a freelance writer for several different venues. I've done feature commercials for IDA.
I not only blog for my own therapy of sorts, but in the hope of helping others. I blog sometimes for RSDSA, RSDHOPE and others. I'm founder of R.A.S.E.for CRPS (@RASEforCRPS on Twitter, RASEforCRPS on Instagram and RASEforCRPS.tumblr.com). Also I founded "People In Pain Unite" on Facebook/Twitter-(@ppl-InPainUnite)/Instagram. On Instagram, I also have a page named: "InvisibleDiseases".
I've been a Patient Health advocate/activist since 2007. I have an Advocacy page at: www.youtube.com/Suzydukettes . I also have a sign Language Youtube page where I post ASL Covers of Many different kinds of songs. The ASL Youtube page is found if you Google "ASLSUZYQ". Along with doing these things; I enjoy being an Ambassador for the U.S. Pain Foundation. I do awareness events and fundraisers for them. I always say that "HOPE is a verb, and in order to have it, you must do something". To keep it, you have to keep doing, trying & not giving up. Most everything you need to know about me, or to find me on Social Media, you can find at: about.me/suzydukettes ...OR suzydukettes.wordpress.com
**I am not a Medical Dr nor do I claim to be an expert regarding any of the subjects I may write about. I write from my own experiences. Also, Please don't copy or reproduce any part of this blog without my permission. Thank you!